Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group a million questions....& not even sure how to ask

Hi. I just turned 30 a few weeks ago. I am married and have three kids, 6, 4, and 2...so i dont have many spare hours to sit staring at the comp screen looking for answers...but i have so many questions! I figured this might be a more direct route...and i can read a little here and there...

I have read some on the NSD however i have always struggled with my wieght and didnt break 100 till the year after i graduated...I currently am at 117 but ive had to work hard to get to that place, i realize excersizing to the point of panting is good for lung capacity and that the NSD is good for stomach stuff but how do i do that and not waste away to nothing????

What is this Iritis stuff...my right eye blurs out on me and i get headaches i went to an eye dr. before i was diagnosed and he said (after dialating my eye and freaking me out) that for everything i mentioned he expected to find something but my eyes were great??? and yet if i close my left i things are blurry??? sometimes it happens with the left too...headaches too...but that could be from the neck pain...I have been diagnosed with A.S. and fibromyalgia...which is the light sensitivity due to???

I am having so much trouble trying to distinguish between the two...(AS and Fibro)has any one had any luck on that???

I read on someones a mention of heart palpatations...any further discription on how that feels?

Currently I'm on 800 mg of IB three times a day...and a prilosec otc at bedtime to "prevent an ulcer". Just today found out about another assistance posibility for enbrel...making that a bit more feasible...and yet the thought of the TNF inhibitors/biologics scare me to death (even though it is becoming a fast reality), im a wife and mom and dont like taking chances...however i want my energy and strength back...homeschooling starts the end of this month. Should i be worried about the side effects of the enbrel???

My husband found out his aunt has A.S. as well which i realize could have upped my kids chances to get this...He has a lot of hip pain and has since he was 13...When he went and asked his dr. they said it was needless to test him, and very expensive and that the ins. probably wouldnt cover it...then mentioned that A.S. comes from std's...that made me upset...obviously he didnt know what he was talking about... So should we proceed to ask my rheumy if he could test him??? What are the odds of that that both of us would have it in our family...let alone the possibility we could both have it! yikes!

What is this about it not affecting women as seriously...is that proven? and always correct? or more dr's that know nothing???

i know the stretching is important...any tips on how to remember to do them everyday...or well the real question would be...how to tough them out and be willing to do them even when it hurts??? ive never been able to touch my toes even when i was a kid...should i be making my kids do stretches now just in case?

How do you make your day work and your responsibilities on a day when you want to curl up in a ball and cry or feel so frustrated you want to lash out???

Well my time is up today...I know that is a lot of questions...to all who answer...thank you...you have no idea what a blessing it is to finally communicate to someone who knows exactly how you feel...

Thanks
Jaye

Hi Jaye,

I am fairly new to this site too. I am sure you will get alot of answers here and find it very helpful.

I too have been dxd with AS & Fibro. AS 13 yrs ago & Fibro 4 yrs ago. I struggle w/ my weight as well. I am 5'7" & am barely able to maintain 110lbs. I started the low starch diet today. Although, I read here that most people lose weight on this diet & I was worried about that as well, I am going against the odds & just believing that I will gain weight because I will feel so much better. I will be posting about that as I go along.

I am really inept when it comes to computer stuff so I don't know how to post a link to a uveitis site, but I'm confident someone will. I can tell you my experience & beliefs. For me, uveitis was painful. I knew right away when I had it because it would hurt quite bad even before it turned red. I too get the blurry vision to the point where I have trouble driving-I have always thought that was from fibro as well as the light sensitivity. However, light sensitivity is also a symptom of uveitis but I never had it w/o pain. There may be those who have.

Although there are some who would argue this point, I think in general Fibro is not considered a disease which causes inflamation. It is not progressive or degenerative. AS is all of those!!!! Fibro tends to have a long list of strange symptoms-most of which I have. A good place to get that list is from the arthritis foundation or google ( ).STARLANYL I suggest that you try to make the time to educate yourself about your disease-it will empower you.

I am a woman & I can bet that AS has affected me worse than some men here. What I have read & been told by Rheumies is that fusion of the spine occurs less in women than in men-women seem to have more problems w/other joints. But, I knew a mother & daughter at my doc's office that both had fused necks? So, every case is different I think.

I can't candy coat it for you Jaye. It's a hard road dealing with all of this when you have so many responsibilities & people that depend on you. I can only say here that you must find time to take care of yourself. A little R&R when you can fit it in-alittle pampering. If you don't it could make things alot worse.

Hope to see you around KA. Tapping in to all the wisdom that is here may help you cope.

Peace, Tam

Hi Jaye,

I have AS but do not suffer from iritis. My opthomologist said I would know it, without a doubt, if I had it. Iritis is VERY painful.

With regard to the biologics, I am on Remicade and failing. It was worth it to me to try because I desperately want some quality of life. I will try Enbrel at some point in the near (I hope) future. Have to be "clean" (off Remicade) for a while. To be on one of these, admittedly, potent drugs is a decision you must make on your own.

With regard to testing. Do you mean the blood test for HLA-B27? While a majority of folks with AS test positve, many do not. I am one who doesn't and my rheumy said that means nothing. There are, as yet unidentified, genes for which they cannot test. My AS happened to show in an x-ray and so I was "lucky" to get my diagnosis from that.

Much literature is written about the percentages of men to women with AS. I think there are many who would disagree with that. My observation, on this forum, has show me that there are an awful lot of women diagnosed. And, I'm sure, a lot more undiagnosed.

Good luck to you,
Jessie

Jaye,
Welcome to our family. If you spend a little time looking around on the site you'll find answers to all of your questions. I can't answer them all, but I'll take a stab at telling you a few things.

First off, Iritis is inflammation predominantly located in the iris of the eye. When you have it your eye turns red and is very light sensitive. Initial treatment of iritis which is not caused by a pathogen (virus, bacteria, mycobacteria, ureaplasma, yeast, mold or fungus) is through the use of topical corticosteroids. if adhesion is anticipated then a dilating drop is used to relax the ciliary body preventing the iris from adhering to the lens in a closed position. Iritis that is stubborn, recurrent or chronic may require systemic treatment through the use of oral steroids, or other immunomodulating drugs. Some individuals will have genetic predisposition to uveitis which is related to autoimmune disease processes. the most common of these 'genes' is the HLA B27 Haplotype which can predispose to uveitis alone or also to the Seronegative Spondyloarthropathies and the enteropathic arthropathies. examples are Ankylosing spondylitis, Reactive arthritis (Reiters syndrome), psoriatic Arthritis, irritable Bowel disease and Crohn's disease. there are other autoimmune disease processes also related to iritis/uveitis.

That will get you started on that subject. There's lots of information out there on this, but the best thing I can tell you is that if you get these symptoms, don't wait, go to your eye doctor right away!

As for the heart palpitations, I don't know that this is particularly related to either AS or Fibro. I know a lot of people who have them from time to time who don't have either of these diseases. Irregular heart beats are a pretty common thing for someone to experience. That said, if you're having them, you should see a doctor and have it checked, because is could be something that needs medical attention.

As for having your husband tested. If you want to do this, then your Rheumy would be a good person to ask. I don't know how important it is. I've never been tested for the gene, and I don't see any reason to do so, at this point. If you need it for a diagnosis to qualify for meds or disability or something, then that's one thing, but the results are not conclusive, so my feeling is, why bother?

I know it's hard some days to get out of bed and get on with your day, but try. I think it's important that we keep moving and living as normal a life as possible. A pity party once in a while is ok as long as you don't go overboard. We all have times when we're down in the dumps and feeling sorry for ourselves. Like I said, that's ok. That's where we come in. Just come here and pour your heart out and get some comfort. Then you can pick yourself up and get on with your life.

Good luck, I hope you find the information and support that you're looking for.

WELCOME, Jaye:

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the NSD is good for stomach stuff but how do i do that and not waste away to nothing????

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The NSD will cause some weight loss, until proteins and fats are used more efficiently, and then it is a matter of doing the reverse of Atkins: DO eat carbohydrate (but not starch)-rich desserts, and if you are able to tolerate dairy, cheese can perhaps help maintain weight. Diet is many times more important than exercise, so if given the choice do stretches over more vigorous routines.

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the neck pain...I have been diagnosed with A.S. and fibromyalgia...which is the light sensitivity due to???

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AS does not cause general sensitivity to light except during episodes of iritis, so FM could be the culprit. The difference between AS and FM is usually that AS is not symmetrical--unlike AS, so if you are hurting on ONE SIDE, it is probably not FM but probably is AS.

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I read on someones a mention of heart palpatations...any further discription on how that feels?

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Heart palpitations seem as if the heart may have skipped several beats and suddenly works harder to make up for this, like a 'fluttering.' Most of us get these sometimes, especially when not properly supplementing (personal experience).

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Should i be worried about the side effects of the enbrel???

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Yes, but not to the extent that you avoid giving this drug a trial; many of us have had great results with Enbrel and especially in combination with diet.

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What are the odds of that that both of us would have it in our family...let alone the possibility we could both have it! yikes!

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Approximately 0.6%, or 1 in 200; very low for both having actual AS...but possible.

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What is this about it not affecting women as seriously...is that proven? and always correct? or more dr's that know nothing???

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Yes, more doctors who know very little about AS...
Women do not follow the same symptom progression as men, and take much longer to fuse as a general rule. Some have suggested that this makes AS potentially much worse in women, since it is more difficult to obtain an accurate diagnosis and the inflammation continues longer prior to fusion, when it is reduced.

I hope that you will join us in the NSD Forum, and that this approach works quickly for You,

John

Hi Jaye

welcome to kickAs - you will find a lot of great information here and loads of support.

with regard to your Q's of iritis I think that has been well covered and you know if you have it and get to an opthomolgist quickly when you have it.

I have 2 small kids 2 1/2 and a 17 month old and I have started to do some yoga in the morning after they have breakfast - I started with just a few stretches and am building a little longer each day - of course they climb on me over me and under me depending what pose I am doing but they are getting used to me doing this and I find it is the only time of day that I can spare 20 - 30 mins to get something done for me; come the end of the day, forget it I am done so i find the am works.
I am 41 and so far my symptoms are mild so that I have only needed medication for my iritis and I see the rheumy a few times a year for follow up - It would be very bad luck for both you and your husband to have AS but it does happen. As for your kids it could increase their risk but that is out of your hands and you know what symptoms to keep an eye out for, worrying unfortunatly will not change that - I was also diagnosed after I had my kids.

Good luck with everything

Kylie

Hi there Jaye - a warm welcome to KickAS. Think most of your questions have been addressed but perhaps some small input from myself might be useful? (Or not!) I am near to 70yrs old, my (now ex) GP gave me an AS dx during a huge flare, and my first big all-time scary flare, when my neck conked out on me, couldn't lift my head without support from my hand - and the pain...not good. Went on for a few months, got a reprieve then went into another flare. At the same time was throwing eye wobblies. From burning pains to brilliant blood infused eyeball - very pretty - and then to blurring vision and finally double vision when looking at lines - that made driving interesting, not. During all this the various meds gave me endless gut problems, until it got to the stage where if I had eaten I was terrified to leave the house (got caught out too many times). My GP kept just changing the meds, did nothing about a referrel and I continued to go downhill. Then other parts of the ole body started to play up: feet like walking on glass shards; hands with trigger finger; knee and couldn't walk properly; elbow accompanied with painful movement; shoulder and pain with loss of ROM (range of movement). Just went on and on. All the niggles that had been creeping on up over the past 40 odd years took a huge bound and broke out the corral together...

Thank God I was directed to this group. About the only thing that my ex GP did was to suggest checking out the internet for AS forum groups. I will give him credit for that. And of course, I found a wealth of information including the LSD diet. And has that been a help. Yes maam. Saved my gut, mobility and sanity!

Changed my GP. Got me to a good opthalmic surgeon - cataracts. Bliss, I can *see*: still do get blurring but now have ?? early Sjogrens Disease - not a cause for a death certificate, it is incurable but can be managed. Saw a good gastroenterologist: he found ademomas, removed them and opined that my GP and he (!) had saved me from certain cancer of the bowel (my grandfather died of cancer of the bowel and now my first cousin - on that side of the family - is experiencing problems). Shoulder went into a big time humdinger - but that is quite another story, and one waiting to be told here (but irrelevant at this time).

Was referred to a really bloody useless rheumy, (needn't go there, yawn) then located a good one who left the country - great, don't weaken, am now searching for a good rheumy, but that can wait awhile. Have X-Rays various showing changes in the hips and sacroiliac; have a sternum that has gone real strange (forget what it is called!); have a khyphosis on the right side of my back; have what appears to be a possible start to fusing on the right ribcage; have severe degenerative arthritis of the shoulders and severe degenerative disc disease C3-4/C4-5/C5-6 (or whichever, not important)

I try to keep off the big meds but do have to have recourse to NSAIDS, take Celebrex as it does not have the side effects of the other anti-inflammatories and take pain meds, have a small selection that we find do not cause (me) side effects.

I do take a variety of supplements and try as far as possible to keep off, away from, the pharmo meds. Will be posting some info on that later.

Do my stretches. Just sitting up properly at the computer, straightening out the scapuula, doing sideways stretches; standing up from time-to-time, sideways stretches, lifting legs and a stetch. Standing tall against a wall trying to get as flat against the wall as possible. Arms overhead (well, not now, no ROM, but 'did' a few months ago) so one arm Touching toes, don't matter that you don't succeed, that aint the point, 'trying' to is the point, getting the s-t-r-e-t-c-h is the point of the exercise!!

Pilates is excellent, but you'll need to join a class for Pilates and have a real good instructor. Yoga is good. Again, a good instructor is a must. Stay well away from aerobics, they could well cause damage. You are not looking to puff an pant, no-pain no-gain idea - that is counter productive, could lead to torn muscles and untold damage. Gentle stretch: hold, relax, stetch is the answer. Especially those sideways rib expanding stretches. One of our members posted a whole series in the Forum here, only a few months ago now. Let's put out a call to locate em. Will make up a separate post. OK?

Walking can be good, so long as you keep the core body muscle, that is the abdominals tightened (takes practice), good abdominal muscles helps the back and the hips, very important especially for women: saggy abdominals means saggy spine which can only lead to back pain! And keep as good a swing to the hips as possible. And shoulders back, head up. Swing along. Does not have to be fast fast, but aim for a good rhythm. It's the rhythm that does it. I swing out with a small hand held radio, can hear soe nice music as well as any traffic - me and dogette go swinging out, up into the fields. Good stuff. We both enjoy it.

Good diet, keep it fresh foods and organic where possible. Learn to read labels and eschew ALL ready made shelf meals and leave ALL sugar substitutes well alone - they are toxic: i.e. Aspartamine, Sucraloose etc etc. If you want sweet, honey is good, pure molasses is good, brown cane sugar, and Stevia - a very sweet herb, brilliant as a sweetener, no calories and non-toxic! Good recipe section right here on the Forum. Can also start to collect your own recipes, keeping an eye out for recipes in mags etc. Oh yes. Sodas. Chuck em all out - full of aspartame. Get yourself a juicer. Good for all the family.

Don't know IF this has helped you any at all. The big AS family is here - and one of the very best families that you could ever meet. Tell ya gal, it's a good place to be with this AS thing, so a big 'welcome'.

You take care hon - be good to yourself. Your body strength and inner strength is needed for your wee family, so be kind to yourself an give yourself 'you' time, every day. Go well - and here's a cyber {{HUG}} -

Keeping on Keepin on (you bet)

Welcome to KickAS Jaye. This is a great place with so many wonderful friendly people full of knowledge and eager to help one another.

I am sorry you are having to deal with this. It is not a fun hand to be dealt but it "can" be played successfully. You can have a good full life.

I have multiple diagnoses; AS, RA, OA, Fibro, SLE, chronic Iritis, Hypothyroidism. If it is autoimmune, I have it. I was diagnosed with JRA when I was 14 but was sick for a long time before that. I am 63 now. We raised 3 beautiful daughters and I had a wonderful career until I had to go on disability at age 43. Life goes on.

My hubby suffers greatly with RA. His back is more fused than mine but he has never been checked for the B-27 gene. I am positive but he/doctors see no reason to check him. Bottom line is treating symptoms. I asked my dr. how he knows whether it is the Fibro, the RA, the Lupus or what that is flaring and he said he can tell by where I hurt. I particularly don't care which it is as long as I can feel better.

We have a son-in-law with AS and of course I have been concerned about my grands with it on both sides. My daughter says, "Mom, don't worry about it. There is nothing that can be done about it one way or another and we aren't even thinking about it unless something bothers them. The plus side is knowing the family history and knowing what to bring up to doctors if the need ever arises." Smart daughter we have there. Their daughter (early teenager) has back pain a lot and has had MRI's, etc. but no blood work. She is into Western Horse shows, scuba diving, LaCrosse, etc. and they choose to think she has hurt it with all of her activities. They aren't going to plant into her head the chances of disease.

You will know for sure if you have Iritis because you won't be able to stand to open it in the light, it hurts so bad. I can tell mine is flaring before it even starts getting red. I have been treating it since I was 30. I am on 5 mg. oral Pred. daily and 150 mg. Imuran daily to protect my eyes. That is the only thing that holds my Iritis/Uveitis.

I have occasional heart palpitations. It feels kind of like a long pause or that your heart skips a beat which it doesn't; it really is a long pause and then a couple of fast ones. I was on meds in my 20's for arrhythmia but have been off of it for many years. Caffiene aggravates mine.

As far as worrying about the meds, I have chosen not to be on the Remicade (at this time). I go back to the rheumie tomorrow and I may go on it. The only reason I am not already on it is because of the Lupus. The Imuran is a chemo drug with some pretty potent side effects and the Pred is potent too. I have been on very high doses of Pred in the past. My suggestion is to "not worry" just be as educated as you can be and make a decision and think positively.

No, AS doesn't come from STD's. I do know that you can have a false positive reading on Syphillis tests for Lupus anyway. I don't know about AS but it is a gene not an STD.

I try to exercise. The pool is the best exercise I have found. As far as your kids, I would keep them very active but I wouldn't have them stretching "just in case" because I wouldn't want them even thinking about the "just in case". Just keep them out of the front of the TV and computer and active as children should be.

You didn't ask too many questions. Come back and ask all you want. I do think you will get different answers from different people as we have all learned our own ways of living with chronic illness.

Listen to your body. If you need to rest, rest. My hardest time was with a very responsible job that entailed long hours but I loved every minute of it. I didn't listen to my body or my doctors about slowing down until I cratered and ended up in the hospital and in bed for over a year. THIS WAS FROM LUPUS NOT AS. Now I do listen to my body. I do get up early and get out with the dog and water flowers, etc. before it gets hot and then I stay inside and sometimes I go back to bed. I know it is not as easy when you are still raising kids. Been there and done that too.
Don't hestitate to ask for help "if" and "when" you need it.
When you need to lie down, just get the kids to lie down with you and read a book to them especially at naptime for the 2 year old. Just take one day at a time and you will learn what will work for you.

I wish you the best and blessings for your family.
May you have a glorious relatively painfree day.

Possi

Hi Jaye, welcome to KA!

I'm sorry you needed to find us, but very glad you did. As you can see, the folk here are very knowledgeable. We have all asked the same types of questions as you at some point or other, and each of us has (to some degree anyway) found the answers that work for us. If not, we're still searching.

I encourage you to try the diet. Alot of people have had very good results with it. It doesn't work for everyone, but it's definitely worth a try.

Also, regardless of whether or not the diet works for you, please make exercise a key component in your treatment plan. It is the one thing that will remain beneficial no matter what you are doing or taking to bring down inflammation (ie. diet or drugs). Just remember to start where you are now. If you can only do one minute at a time (because of pain, or because of lack of exercise to this point), then do one minute, 15 times a day and build up to 15 minutes at a time. Start with stretching/flexibility. This will ensure that your joints stay mobile and will also help your tendons and ligaments (which play a part in AS). Once you can do 15 minutes of stretching in one shot, add strengthening/weight training of some kind. This will help your muscles do their job of supporting your skeletal structure. A bottle of water is a great substitute for weights. When you can do your 15 minutes each of stretching and strengthening, only then add cardio. This is because by this time you will have toned your muscles and joints to the point that they can do their jobs properly as you get your heartrate going. Cardio can be swimming, walking, whatever turns your crank. If you have difficulty with full body cardio, sitting in a chair and moving your arms like an orchestra conductor will do as a substitute until you can do full body. And, again, if you can only do one minute at a time, start there and work up. Stretching and cardio can/should be done every day, once you've worked your program up. Strengthening should be done on a rotation so that different muscle groups are worked on different days. This gives the muscles a chance to recoup.

You mention that you homeschool your kids? Perhaps you could make stretching/exercise a part of their school day. Something fun that you can all do together. And if you are having a particularly bad day, back off of it. Just do gentle stretches and breathe your way through them. You will find your own pain limitations as you go. Just listen to your body.

Any med you take is going to have side effects to some degree or other. All I can say about Enbrel and the other biologics is that they have been miracles for some of us. I started Remicade a year ago and every day I am blown away by the changes in me since starting it. Do your research, ask questions and make the right decision for you.

The doc that said AS is caused by STDs should be shot, by the way. What an idiot.

It would be weird in the extreme if your husband has AS too. I hope it isn't the case.

AS presents extremely differently in women than it does in me. It doesn't generally progress as quickly in us and we don't usually have the severe spinal curvature that men can get. Every case is different, of course, but that's the way it is generally. The latest ratio of men to women with AS has now been upped to about 3:2. Dr. Mohammed Khan (world renowned expert who has AS himself) feels that this is the actual ratio because women are so often misdiagnosed.

Unfortunately, sometimes you have to keep living your life, no matter how horrible you feel. On those days, long relaxing breaths can be a big help (so would a punching bag for that matter). Be patient with yourself and others, and just do what you can.

Hugs,

I was surprised to see all the responses this morning as I logged on...wow!

After looking over more info I am realizing how fortunate i am to have been diagnosed so quickly for me it felt like an eternity...but now i realize 8 mo after a flare up really isnt bad! It gives me hope as far as playing this game on the offense rather than the defense!

My rheumy was awesome I walked in the first visit, we talked and i handed him three pages of symptoms/frequency and a whole lot of other info...he sent me to lab, called a week later and sent me for a c.t. of the s.i. joints..I walked in the next time, he tossed my chart on the table, said i know what is wrong with you, you were right something was very wrong, you listened to your bady and fought for answers. you have a.s. and then explained what he thought we should do...he is very familiar with a.s. and a dr. that shakes your hand when he walks in and takes time to be sure to answer all your questions. He encouraged me to look on the interent for more info, and that is how i found kickAS...I have an appt on mon. and get to pick up a "medical assist card" that will help on the financial front to get me started on the enbrel...im sure i will be posting many more questions when that happens...I hate shots

Possi>>>>your daughter is very wise, that was some very good food for thought...thank you!

Dragonslayer>>>i will check out the nsd forum next time i get a bit of time, thank you for the info on that...i was thinking the nsd was like the atkins...you set that straight...thanks!

To the rest>>>I am still reading and thinking over your information...thank you for replying!

As for the info on the palpatations, sometimes it feels as though my heart jumps...and it scares me...ive mentioned it to the dr. before, but not really firmly...that is why i asked for more info...thinking i should mention it to the rheumy on mon.

Caffiene was cut out of my diet a year or so ago...i miss my morning cup of energy...but now i just drink hot water, or caffine free/herbal tea...i hate soda always have, in fact it has been very interesting to see what i have cut out of my diet all on my own just out of what i like/dont like or what makes my tummy hurt...during my last pregnancy I started this love for fruits and veggies, and meat just wasnt that great...i eat it but not as big of portions as i used to. Which was one of the reasons i was worried about the nsd because i survive on carbs...ill have to work on that.

The biggest thank you for the reminder to sit/rest when i need to...I am a fighter and have a tendancy to push till something is done...not till im tired...and usually i push myself too far. It was a good reminder as I start to homeschool my oldest and have taken on a b-sit job of a 3 yr old boy to help cover med. expenses...sit...rest...lay down...those are odd concepts : ) just kidding! they are EXCELLANT reminders...THANK YOU!!!

Blessings on you all
Jaye